Hard to exhale

Wingman · Post by **Wingman** » Fri Mar 31, 2006 6:06 pm

Ok, I am BRAND NEW. Had my sleep study with CPAP on Tuesday and brought home my equipment today. My insurance is renting for the first month, although they bought the mask and humidifier.

In the hospital I had wires all over me and the CPAP with the nose pillow mask. It seemed ok but took a bit of getting used to. I did sleep.

This afternoon I tried out the equipment. I have to use 12cm as the setting. Holy crap............. is it this hard for everyone to exhale? I feel like I have to fight to breathe with this thing. Inhaling is great....nice deep breaths but when I exhale it's like blowing up a balloon. Seems harder than in the hosptial.

PLEASE give me feedback on this. Oh, and I was told that the C-Flex.....here in my area the stores are told not to activate it by the doctors. My machine doesn't have it by the way. Since it's a rental for a month, once my insurance decides to buy it, should I push for a better machine?

Ellen · Post by **Ellen** » Fri Mar 31, 2006 6:21 pm

I sure don't know much, as won't get my machine till Monday, BUT I have done MUCH reading and it sounds like the air pressure (I think you said 12) used to keep your airways open - you also have to exhale AGAINST. I have read of people who feel like their ribs, backs, and lungs are sore after this. Because of this (and because my insurance is only major medical so I have to pay for whatever) I went ahead and got the APAP with CFlex and will be trying it with a full face mask, as I have been on oxygen since last September at 5L and fight in my sleep to keep that on.

I would say if you experience soreness, and if your insurance will allow, you need to report this to your equipment provider and see if they can rent you either a Bilevel or an APAP right up front. Remember, however, I have not even received mine so I am only speaking from all the reading I have done.

Hope this helps you and GOOD LUCK - I'm sure we're all going to feel like new people once we get the hang of this!!!!

Waiting for mine and a bit nervous and excited to do this. Keep me up on how you do........?????

tooly125 · Post by **tooly125** » Fri Mar 31, 2006 6:29 pm

Well i'm in no way an expert only having 40 hours of therapy under my belt but with a sleep setting of 19 and a full face mask exhaling is not a problem. you really should get the C-flex.

Linda3032 · Post by **Linda3032** » Fri Mar 31, 2006 6:57 pm

Wingman, most of us on this forum agree that an AUTO machine is the way to go if your insurance will cover it.

If you can, get a Respironics Auto with cflex, humidifier, etc. That's a really decent machine and with a pressure of 12, you should have no problems.

The correct mask is the "killer" because there is no one mask that works for everyone. It's trial by error most of the time.

Good Luck

Handgunner45 · Post by **Handgunner45** » Fri Mar 31, 2006 7:05 pm

I to am a newbie at this, just 3 nights under my mask. When they put me on CPAP in the sleep lab they had a hard time titrating me as I could hardly get to sleep. I was not looking forward to trying to sleep with that every night. The CPAP I have does have the C-flex and when I tried to sleep with it, I had no real problems once I drifted off to sleep. I am claustrophobic and getting to sleep with the full face mask is somewhat of an adventure, but so far once I drift off, I stay asleep till morning. Unfortunately I am a mouth breather so I can't comfortably make a nasal mask work for me (they really tried in the sleep lab). My experience (limited as it is) tells me that you will want to buy a machine with the C-flex technology.

Good Luck

rested gal · Post by **rested gal** » Fri Mar 31, 2006 7:31 pm

Wingman wrote:Oh, and I was told that the C-Flex.....here in my area the stores are told not to activate it by the doctors. My machine doesn't have it by the way. Since it's a rental for a month, once my insurance decides to buy it, should I push for a better machine?

How interesting. Was it someone at the DME ("durable medical equipment" - home health care equipment store) who told you that in your area "stores are told not to activate it [C-Flex] by the doctors"? Just curious as to who told you that, because that sounds kinda' like a bit of misleading info on the part of a DME who is pushing the cheapest machines possible for the most profit possible.

Perhaps that's so. Perhaps the "sleep doctor" around there doesn't want C-Flex used. There are some doctors who should be hooked up to a cpap machine all night, every night for a week or so - first few nights without C-Flex, then give 'em a break...turn on the C-Flex toward the end of the week. LOL!! See what they say about whether or not you can have C-Flex after they've lived with it both ways themselves.

But, I'm betting it's the DME telling you that. And what the DME is reallllllly saying is, "If the doctor writes 'cpap' on the Rx and doesn't specify 'cpap with C-Flex', we're gonna twist that into saying the doctor doesn't want you to have C-Flex. We make more money giving you a machine without C-Flex, so that's what you're gonna get."

Brent Hutto · Post by **Brent Hutto** » Fri Mar 31, 2006 8:15 pm

I find that my sensation of having to work harder to exhale goes away after the first few minutes. My APAP prescription is for 7-12cm pressure and even at the starting point of 7cm it seems like exhaling is a lot of work. After I've fallen asleep the first time, for the rest of the night it doesn't seem noticable even if the machine cranks up to 11cm or so.

I can wake up during the night and think the machine's not running, look at the LCD and it's at 10.6 or 11.2 and I can't even feel it. Yet a few hours earlier 7.0 seemed like I needed to really blow out to exhale. It's a darned funny effect, I think it just has to do with relaxing and not be anxious about expecting to have trouble breathing.

rested gal · Post by **rested gal** » Fri Mar 31, 2006 9:19 pm

Brent Hutto wrote:I find that my sensation of having to work harder to exhale goes away after the first few minutes. My APAP prescription is for 7-12cm pressure and even at the starting point of 7cm it seems like exhaling is a lot of work. After I've fallen asleep the first time, for the rest of the night it doesn't seem noticable even if the machine cranks up to 11cm or so.

I can wake up during the night and think the machine's not running, look at the LCD and it's at 10.6 or 11.2 and I can't even feel it. Yet a few hours earlier 7.0 seemed like I needed to really blow out to exhale.

What Brent wrote is true for many of us. A pressure that seemed very difficult during the first several breaths can feel so easy later during the night that we wake up wondering if the machine is even running until we put our hand in front of the exhaust and feel it.

That said, if a person has such difficulty exhaling against a pressure that they just can't relax and go to sleep, C-Flex can make a very comfortable difference for many. Can make the difference between "I just can't do this kind of treatment." and "Whew, that makes it easier...yeah, I can do this."

Wingman, even if your machine doesn't have C-Flex, it probably does have a ramp feature. Ramp can make it easier to get to sleep if the DME has set ramp to start at, say, 5 or 6 cm, and uses a timer (say, 30 or 45 minutes) to gradually increase the pressure, giving you a chance to fall asleep before it gets up to your prescribed pressure.

The lowest pressure of 4 cm H2O for ramp is usually "too low" to be comfortable for many people...can give you a "I need more air!" feeling, so you might want to be sure the DME has:

1. enabled ramp
2. set the starting ramp pressure for 5 (or 6, whichever feels more comfortable to you to begin with.)

If you wake up during the night and again feel it is too difficult to breathe out against 12, you can hit the Ramp button on top of your machine and the ramp will start all over again down at the low pressure.

Goofproof · Post by **Goofproof** » Fri Mar 31, 2006 9:20 pm

I think Rested Gal, hit the nail on the head, the DME is seeing Dollar Signs in his sleep. What they don't take into consernation is the extra fighting to breath, makes people more liable to fail, but why should they care they have already made their money, on to the next sucker.

elliejose · Post by **elliejose** » Fri Mar 31, 2006 9:34 pm

I started out on regular cpap with a pressure of 14. Without the help of the folks on here, I would have given up.
Yes, it was terribly hard to exhale at that pressure at first!
I worked myself to death trying to exhale for about 30 - 45 minutes and was so tired that I removed the mask. However, I eventually got the md to realize that I could not do it and after trying 3 other machines, I got a Remstar auto with c-flex. Without it, I don't think I would ever had been able to comply.
Now, I don't even use the c-flex.
But in the beginning it made all the difference in the world. It took about 3 months to finally get the auto and to sleep all night with a mask on but it was worth all the sleepless nights I went through.
Keep insisting and hopefully you should be able to get one, too. Some nights my 90% pressure is 18 or 20, but most nights it is 14 or 15, with a good portion of the night spent at a pressure of 12 or 13.

It is worth keeping on insisting for. There is no reason for it to be so hard to do and uncomfortable.

Good Luck!!!

Wulfman · Post by **Wulfman** » Fri Mar 31, 2006 9:57 pm

Wingman wrote:Since it's a rental for a month, once my insurance decides to buy it, should I push for a better machine?

ABSOLUTELY!!! Depending on your insurance provider, coverage, deductibles etc., you might look into purchasing online (like from CPAP.COM) and get the machine YOU want and then submitting a bill (from yourself) to your insurance provider for reimbursement. You most likely will save yourself and your insurance provider lots of money. And, you'll be able to take control of your own therapy.
The "misinformation" that the DMEs keep trying to spread around is downright scary.

Make sure that YOU keep your original copy of your prescription.

Best wishes,

Den

Gidgie · Post by **Gidgie** » Fri Mar 31, 2006 10:41 pm

Just recently I spent a night without c-flex.......and the next day told the RT/DME don't even GO there! It was painful......even at 'only' 15.....that was with the rental machine. Now have my own Remstar Pro2 with c-flex.....pressure back up to 17,........and Gidgie's happy again. Don't let any ol' DME tell you it isn't an option......after reading some of the horror stories here I think there's a strek of sadism in some of those people!

Goofproof · Post by **Goofproof** » Fri Mar 31, 2006 10:50 pm

[quote="Gidgie"]Just recently I spent a night without c-flex.......and the next day told the RT/DME don't even GO there! It was painful......even at 'only' 15.....that was with the rental machine. Now have my own Remstar Pro2 with c-flex.....pressure back up to 17,........and Gidgie's happy again. Don't let any ol' DME tell you it isn't an option......after reading some of the horror stories here I think there's a strek of sadism in some of those people!

Wingman · Post by **Wingman** » Sat Apr 01, 2006 6:42 am

I have a follow up appointment with my sleep doctor on Monday and I will mention a lot of this to him.

Thank you for all the ideas/suggestions. I slept ok last night but seemed to be very aware of the machine/mask most of the night.

GarthsWorld · Post by **GarthsWorld** » Sat Apr 01, 2006 8:41 am

I have cflex (ins. won't cover auto) and when I was in the sleep lab they had be try using a machine without it and then with it. It does make a huge difference in being able to exhale. And I agree with the post that says "look elsewhere" if you dme isn't being helpful. You are going to be spending a lot of time with that machine; get one that you are best able to work with.

PS: If you can get your dme to provide you with a cflex model, but not turn on the cflex, the friendly folks on this site taught me how to be able to adjust the setting that aren't in the manual the patient receives!